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NDAR provides a single access to de-identified autism research data. For permission to download data, you will need an NDAR account with approved access to NDAR or a connected repository (AGRE, IAN, or the ATP). For NDAR access, you need to be a research investigator sponsored by an NIH recognized institution with federal wide assurance. See Request Access for more information.

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Format should be in the following format: Activity Code, Institute Abbreviation, and Serial Number. Grant Type, Support Year, and Suffix should be excluded. For example, grant 1R01MH123456-01A1 should be entered R01MH123456

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For clinical trials, the option to link to the clinical trial in clinicaltrials.gov is optionally provided.

Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Toward Outcome Measurement of Anxiety in Youth with Autism Spectrum Disorders
Lawrence D. Scahill 
This four-year multisite project will advance outcome measurement of anxiety in future clinical trials in youth with autism spectrum disorders (ASDs). Program announcement (PAR-11-045) declares that the dearth of outcome measures in developmentally disabled populations is a major impediment for drug research in developmentally disabled populations. Impairing anxiety is common in youth with ASDs and a plausible treatment target, but poorly studied (White et al., 2009; van Steensel et al., 2011; King et al., 2009). There are well-accepted outcome measures for anxiety in typically developing youth (RUPP Anxiety Group, 2001; Walkup et al., 2008). Given the language and cognitive deficits in ASDs, these measures are not suitable for youth with ASDs without modification. The need for outcome measures for anxiety in youth with ASDs has also been noted by consumer groups (www. autismspeaks.org). We have assembled an outstanding team of investigators and consultants to develop a parent-rated and a clinician-rated instrument for measuring anxiety in youth with ASDs who participate in clinical trials. We propose a mixed method approach in line with the FDA monograph: Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims (www.Fda.Gov/Cder/Guidance). In Yr 1, focus groups with parents will explore the manifestations of anxiety in children with ASDs. This information will be used to refine the CASI Anxiety scale (DSM-IV-based parent-rating) and modify the clinician-rated Pediatric Anxiety Rating Scale (PARS). Yr 2 will collect data on the revised CASI Anx scale (20-25 items) in 900 children with ASD ages 5 to 17 years on a secure web site. We will examine the distribution, internal consistency, factor structure and item analysis of this parent-rated scale. Test-retest reliability of the scale will be evaluated in a subsample of online respondents and a sample of subjects assessed in person. Validity of the CASI Anx scale will be evaluated by contrasting the correlations with another parent-rated measure of anxiety (convergent validity) and with measures of repetitive behavior, social disability and irritability (divergent validity). The revised PARS will be collected via in person assessments of 90 subjects to evaluate reliability (inter-rater, internal consistency) and validity in Yr 3. In Yrs 3-4, a high anxiety subgroup (above threshold on the CASI Anx scale) will be compared to controls (ASD with low anxiety) on physiological measures of heart rate [HR], heart rate variability [HRV] and electrodermal activity [EDA]). HR, HRV and EDA will be measured at rest and under mildly anxiety provoking conditions. Results from this exploratory investigation may identify read outs for early testing of compounds for anxiety in ASDs. The project has four deliverables: focus group results (Yr 2); a reliable and valid parent-rated anxiety outcome measure (Yr 3); a reliable and valid clinician-rated anxiety measure (Yr 4); preliminary HRV and EDA findings (soon after the grant period).
NDAR
Closed
Shared
$2,652,375.00
79
0
1
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NIH - Extramural None


R01MH099021-01 Toward Outcome Measurement of Anxiety in Youth with Autism Spectrum Disorders 09/15/2012 05/31/2016 0 1 EMORY UNIVERSITY $2,652,375.00

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Experiments

To create a new Omics, eye tracking, fMRI, or EEG experiment, press the "+ New Experiment" button. Once an experiment is created, then raw files for these types of experiments should be provided, associating the experiment – through Experiment_ID – with the metadata defined in the experiments interface.

IDNameCreated DateStatusType
No records found.

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Shared Data

Data structures with the number of subjects submitted and shared are provided.

ACE Family Medical History Clinical Assessments 22
ACE Subject Medical History Clinical Assessments 18
Aberrant Behavior Checklist (ABC) - Community Clinical Assessments 22
Anxiety Disorders Interview Schedule Parent (ADIS IV P) Clinical Assessments 22
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 1 Clinical Assessments 1
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 2 Clinical Assessments 1
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 3 Clinical Assessments 19
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 4 Clinical Assessments 1
Caregiver Strain Questionnaire Clinical Assessments 21
Clinical Global Impression (CGI) Clinical Assessments 21
Demographics Clinical Assessments 22
Height and Weight Clinical Assessments 22
Repetitive Behavior Scale - Revised (RBS-R) Clinical Assessments 22
Research Subject Clinical Assessments 22
Screen for Child Anxiety Related Disorders (SCARED), Parent/Child Clinical Assessments 22
Social Communication Questionnaire (SCQ) - Lifetime Clinical Assessments 22
Stanford-Binet Intelligence Scales, Fifth Edition (SB5) Clinical Assessments 21
Vineland-II - Survey Form (2005) Clinical Assessments 20

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Publications

Publications relevant to NDAR data are listed below. Most displayed publications have been associated with the grant within Pubmed. Use the "+ New Publication" button to add new publications. Publications relevant/not relevant to data expected are categorized. Relevant publications are then linked to the underlying data by selecting the Create Study link. Study provides the ability to define cohorts, assign subjects, define outcome measures and lists the study type, data analysis and results. Analyzed data and results are expected in this way.

PubMed IDStudyTitleJournalAuthorsDateStatus
27694457Create StudyA Complex Network Perspective on Clinical Science.Perspectives on psychological science : a journal of the Association for Psychological ScienceHofmann SG, Curtiss J, Mcnally RJSeptember 2016Not Determined
27182094Create StudyInterpersonal Emotion Regulation Questionnaire (IERQ): Scale Development and Psychometric Characteristics.Cognitive therapy and researchHofmann SG, Carpenter JK, Curtiss JJune 2016Not Determined
27009055Create StudyPsychodynamic therapy: a poorly defined concept with questionable evidence.Evidence-based mental healthHofmann SGMay 2016Not Determined
26670323Create StudyFactor Structure of the Parent-Report Mood and Feelings Questionnaire (MFQ) in an Outpatient Mental Health Sample.Journal of abnormal child psychologyJeffreys M, Rozenman M, Gonzalez A, Warnick EM, Dauser C, Scahill L, Woolston J, Robin Weersing VAugust 2016Not Determined
26094200Create StudyEffect of intranasal oxytocin administration on psychiatric symptoms: A meta-analysis of placebo-controlled studies.Psychiatry researchHofmann SG, Fang A, Brager DNAugust 30, 2015Not Determined
25882391Create StudySensitivity of the modified Children's Yale-Brown Obsessive Compulsive Scale to detect change: Results from two multi-site trials.Autism : the international journal of research and practiceScahill L, Sukhodolsky DG, Anderberg E, Dimitropoulos A, Dziura J, Aman MG, Mccracken J, Tierney E, Hallett V, Katz K, Vitiello B, Mcdougle CFebruary 2016Not Determined
25827035Create StudyTreatments for social anxiety disorder: considerations regarding psychodynamic therapy findings.The American journal of psychiatryHofmann SG, Barlow DH, Clark DM, Hollon SD, Mayo-Wilson EApril 2015Not Relevant
25774643Create StudyPsychometric properties of an innovative self-report measure: The Social Anxiety Questionnaire for adults.Psychological assessmentCaballo VE, Arias B, Salazar IC, Irurtia MJ, Hofmann SG, September 2015Not Determined
25072016Create StudyAutism Spectrum Disorder: Defining Dimensions and Subgroups.Current developmental disorders reportsOusley O, Cermak TMarch 1, 2014Not Determined
24342389Create StudyChildren's Yale-Brown obsessive compulsive scale in autism spectrum disorder: component structure and correlates of symptom checklist.Journal of the American Academy of Child and Adolescent PsychiatryScahill L, Dimitropoulos A, McDougle CJ, Aman MG, Feurer ID, McCracken JT, Tierney E, Pu J, White S, Lecavalier L, Hallett V, Bearss K, King B, Arnold LE, Vitiello BJanuary 2014Not Determined
24158679Create StudyMeasuring anxiety as a treatment endpoint in youth with autism spectrum disorder.Journal of autism and developmental disordersLecavalier L, Wood JJ, Halladay AK, Jones NE, Aman MG, Cook EH, Handen BL, King BH, Pearson DA, Hallett V, Sullivan KA, Grondhuis S, Bishop SL, Horrigan JP, Dawson G, Scahill LMay 2014Not Determined
23800481Create StudyThe role of emotion regulation in autism spectrum disorder.Journal of the American Academy of Child and Adolescent PsychiatryMazefsky CA, Herrington J, Siegel M, Scarpa A, Maddox BB, Scahill L, White SWJuly 2013Not Determined
help.tab.dataexpected

Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
No records found.
help.tab.dataexpected.addnew
Data Expected
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Clinical Global Impression (CGI) info iconApproved
Clinical Global Impression of Severity info iconApproved
Social Communication Questionnaire (SCQ) info iconApproved
ABC Community info iconApproved
Child and Adolescent Symptom Inventory (CASI) info iconApproved
Pediatric Anxiety Rating Scale (PARS) info iconApproved
Demographics info iconApproved
Medical History info iconApproved
Vineland (Parent and Caregiver) info iconApproved
Research Subject and Pedigree info iconApproved
Physical Exam info iconApproved
ADOS info iconApproved
Childrens Yale-Brown OC Scale (CY-BOCS) info iconApproved
Caregiver Strain Questionnaire (CGSQ) info iconApproved
Repetitive Behavior Scale - Revised (RBS-R) info iconApproved
Stanford Binet info iconApproved
Screen for Childhood Anxiety Related Emotional Disorders (SCARED) info iconApproved
Anxiety Disorders Interview Schedule info iconApproved
Structure not yet defined

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Associated Studies

Studies that have been defined using data from a Collection are important criteria to determine the value of data shared. The number of subjects column displays the counts from this Collection that are included in a Study, out of the total number of subjects in that study. The Data Use column represents whether or not the study is a primary analysis of the data or a secondary analysis. State indicates whether the study is private or shared with the research community.

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